Monday, August 22, 2016

Becoming Disabled - The New York Times


This is the first essay in a weekly series by and about people living with disabilities.

Friday, August 19, 2016

Laura Hillenbrand: Leaving frailty behind

Author Laura Hillenbrand: Leaving frailty behind
Paul Costello on August 17, 2016

Laura Hillenbrand speaks like she writes: beautifully. She captures
moments like getting on a horse to ride again in ways that make you
feel like you, too, are riding and feeling the wind in your face.

Hillenbrand, one of the most successful writers of modern times, has
suffered many years from chronic fatigue syndrome or, as she likes to
refer to it, myalgic encephalomyelitis syndrome. (She despises the
term CFS, as she thinks it portrays those who suffer from it as lazy
and contemptible.) Astonishingly, she wrote two great books while
enduring vertigo and extreme exhaustion from her illness. Seabiscuit
and Unbroken captured the imagination of readers and there are more
than 13 million copies in print. Seabiscuit is the story of a
racehorse that captured America's heart during the Great Depression
while Unbroken details the saga of Louis Zamperini, who survived a
bomber crash in the Pacific in World War II and spent two and a half
years as a prisoner of war.

For the summer issue of Stanford Medicine magazine, a special on
well-being, I was curious what the word "well" meant to someone who
has been unwell for so long – so I reached out to the author. In the
conversation that followed, she graphically detailed how she was
ravaged by the disease and how – after being stricken in 1987 – her
symptoms at times were so severe that for two years she was
incapacitated and house-ridden. She told me she has made a lot of
recent changes in her medical treatments and in her life; she has
pushed a lot of boundaries such as moving across country to Oregon to
be with her boyfriend.

I sensed that Hillenbrand has uncovered a range of newfound strengths
and is trying to leave her frailty behind. While she knows she can
never escape her chronic illness, there is a sense of optimism and
wonderment in her voice over her new beginnings.

As we ended our conversation I couldn't help but ask about a new book.
She says she's not ready to disclose the topic yet, but it will be "a
whole lot of fun."

Hopefully, readers who have loved her work will relish this 1:2:1
podcast for her startling frankness about how she achieved great
writing success while besieged by a mysterious illness. For others who
don't know Hillenbrand's writings or her personal story, I hope
they'll be in awe – as I am – that she did such excellent work while
smothered in pain and darkness.

Thursday, August 18, 2016

Hillary's stance on Disability

The thought of considering Clinton felt hypocritical of me.  I told myself, "How can I support someone who probably cares more about Wall Street than me?"  But I certainly couldn't consider Donald Trump, who mocks disabled people and assumes we're stupid enough to think that's not what he was doing.  So, begrudgingly, I told a Hillary supporter with a disability that I was now considering supporting Hillary. He immediately introduced me via email to a blind Clinton staffer. Within literally minutes, she emailed me at 9 p.m. saying she would like to speak to me about the campaign. I was so encouraged by how quickly they responded, after the months I was ignored by Bernie.
She didn't treat me like a nuisance like the Bernie campaign did but rather an asset.  She wanted to know my legal and advocacy opinion on disability policy.  She explained in detail how Hillary planned to initiate change for us with sophisticated, legal political strategy.  And, then she asked me to come on board and help the campaign best meet the needs of the disability community ...  I soon realized that the Clinton campaign didn’t just care about the disability community; they hired us and treated us like the intelligent people we are. 

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Check listings for discounts available for the disabled.  In some areas, you can even save on your property taxes.

Friday, July 8, 2016

Pregnancy and ME/CFS

"Pregnancy and ME/CFS"
By Peggy Rosati Allen, MS, CNM, WHNP

Thursday, July 7, 2016

How to get rid of a disease.....


In 1954, the government redefined polio. I wrote about this other little detail of history that has been widely overlooked in my article "Polio Wasn't Vanquished, It Was Redefined."11 Dr. Greenberg explained this classic example of government sleight of hand…

In order to qualify for classification as paralytic poliomyelitis, the patient had to exhibit paralytic symptoms for at least 60 days after the onset of the disease. Prior to 1954, the patient had to exhibit paralytic symptoms for only 24 hours. Laboratory confirmation and the presence of residual paralysis were not required. After 1954, residual paralysis was determined 10 to 20 days and again 50 to 70 days after the onset of the disease. This change in definition meant that in 1955 we started reporting a new disease, namely, paralytic poliomyelitis with a longer lasting paralysis.12

* * *
And three decades later, they defined Myalgic Encephalomyelitis out of existence by changing the name to Chronic Fatigue Syndrome.
As Dr. Dowsett noted, when they changed the name, all research and knowledge about ME "disappeared" -- the connection was lost and we were persuaded that we had a new disease about which nothing was known, rather than that we had an old disease with decades of research.

Tuesday, July 5, 2016

Millions Missing Round 2, Sept. 27

Join us for #MillionsMissing Round 2 this September 27th.
View this email in your browser

Announcing #MillionsMissing Round 2


On May 25th, you took to the streets in 13 cities around the world. You helped us trend the #MillionsMissing hashtag. Together, we made history.

This September 27th, we want to get louder, bigger, stronger. More cities, more mobilization, more press coverage. Will you join us?

STEP #1: Fill out this form

STEP #2: Join an organizing call
I want to support a protest in my area!
Copyright © 2016 The Myalgic Encephalomyelitis Action Network, All rights reserved. 
You are receiving this email because you are a member of #MEAction. 

Our mailing address is: 
The Myalgic Encephalomyelitis Action Network
PO Box 1248
PrincetonNJ  08542